MVD next tue

[Fraalan]

I am glad I found this site just in time.
I have had TN for a year or so and just recently found out what I am dealing with. The emergency room did a cat scan last month and came up with the diagnosis quick.
I followed up with a pathetic neurologist who was a "cluster headache specialist" what a crock.
He put me through tests for 3 weeks and came up with bupkus
After my last meeting with him i walked directly next door into the emergency room.
Their pain management guy gaceme 60 oxycontins and said they probably wont help.
After a week of not having calls returned from my neurologist I went for the best.
I fly to Univ. pittsburgh Sunday and will be in their hands Monday morning.

SO my symptoms...
everything is on the right side.
I cannot swallow anything thicker than tomato soup. chewing is out of the question. My upper teeth (right side) have been aching for weeks. feels like the all need root canals. I confirmed with 2 dentists this is not the case.
my glands are swollen under my jaw, from my chin to my ear. My ear is so sensitive to sound it feels like anything loud shocks diectly to my teeth. I constantly pinch my nose and blow to pop my ear drum as there is pressure in my ear. my rt side of my tounge is sore.
No peircings but i did have a abscess from a root canal years ago. upper right side.
Meds include lyrica and carbitrol sp? and 20 mg oxycontins.
The oxy's don't do much ecxept keep me from driving.
I am 36 male and too young for this insanity.

Thanks in advance for any encouraging thoughts.

[southerngirl]

I know before the crash we had several here that went to a dr in Pittsburgs what is the name of yours. They said he was very good but I can't remember his name. I'm glad you found us, you are young and the operations has helped many people that have come and gone on with there life with great success. Some have hung around and hopefully they can answer some questions of yours. I know if I could have done it I would have a long time ago. So keep in touch and let us know how things go, you will be in our prayers on your big day. Actually we use to keep a list of the people that we going under the knife;) for prayer and I believe that would be good to start up again.
Catherine

[ella138]

Hi Fraalan
I'm sorry you are going through so much pain. When I had my MVD, this site was a godsend for me. Before the "big crash" of BrainTalk I had a diary posted that I kept on line as I was healing from the surgery. After reading your post I decided to stop being so lazy and repost it. There have been a few people on here that have had successful MVDs. The only tip I wil give you, is make sure your surgeon has an excellent personal success rate for this sugery. Also make sure he has done many of them. In the right hands you will be fine. If you have any questions at all please feel free to ask no matter how insignificant you might think the question is. Do everything you can, to set your mind at ease.

[Fraalan]

http://www.neurosurgery.pitt.edu/faculty/kassam.html

I am not 100% sure I need the MVD.
My MRI seems to be negative for the loop, but my Dr was incompetent.

Thanks for the prayers.

[Fizzbw]

It's worth doing! The chance that it could work and you be pain free is worth the op pain and risks - in my opinion! But then I'm having my 3rd on Monday!!!! :D

Take care and best of everything - please let us know how it all goes, and any other questions, please ask!

Niki ***

[Fraalan]

your third? is that a redo of previous surgeries, or adding more padding along the nerve?

where are you having your work done?

[Fizzbw]

I'm in the UK - have had 2 previous, one worked for 6 months (had wacking great artery compression) but then failed, second not worked. Third is a teflon removal - my new Consultant uses the Japaneese technique of slinging the offending vessel, and not using teflon to pad the nerve - he thinks it is possible that I have had a reaction to the teflon and developed a teflon granuloma - this is very rare so don't panic if you are having teflon put in! However I have always had doubts about the teflon for some reason and when I found out Prof Coakham did his MVD's like this I was very interested. He had retired but is coming in specially to do me!! ;)

Niki ***

[baywatcher]

Fraalan, none of the techniques they use to give a picture of the nerve/artery can really be depended on. Almost everyone here who has had an MVD has gone into it on faith, not having any guarantee that there is really a compression. But as I recall, there are a vanishingly small number of patients who report that when their skull was opened there was nothing wrong. Your chances are very good indeed that the surgeon will find a problem and repair it, and that you will be able to live pain and drug free.

Ella has reposted her diary, the one she kept through her recovery period. It gives a really good idea of how recovery progresses in an uncomplicated case. The one thing that I remind people is that it will take time to feel as full of energy as you used to - this is major surgery and the anaesthetic has profound effects on your body. Even if the first few days are filled with euphoria, don't be tricked into thinking that you can dive right back into life, full speed ahead. Give yourself time to heal - enough time - it may be more time than you expected (or wanted) to spend - but be easy on yourself and don't push it, the result is worth waiting for.

You're absolutely right, you're too young and have too much ahead to let this go on interfering with your life. Before the crash we had a forum member who was about your age who had gone back for his second MVD. The first one had been a great success but after ten years he had a recurrence of the tn and went for surgery again. This was also successful and he is now living a full life.

Everyone will be thinking of you on the big day. Come back and let us know how things are going as soon as you feel up to communicating again. Nancy

PS - if this sounds kind of Mom-ish, well, at my age I'm Mom to everyone here!

[Fraalan]

sounds good nancy.
I am having the thoughts

maybe the 2 dentists were wrong.
maybe the ER doctors are wrong.

I am tired of crying and explaining what is happening to me.

I appreciate the mom looking out for me, I think that is exactly what I am looking for.. Reassurance.

My glands are so swollen it is amazing.
Has anyone told of teeth loosening (just a little) from all the swelling?
The sewlling starts at my chin and ends at the top of my ear.

I am scared.

[southerngirl]

Scared is normal under any surgery, but just remember you have alot of people here praying for you and there have been alot of successes with this surgery. Like I said before most of them have gone on with there lives and I'm sure enjoying pain free days. You will be in our prayers on that day, keep the faith and stay in touch when your able
Catherine

[irishchick]

Hi there, you are either in surgery now or close to it. I had the MVD in March 2005, best decision I ever made. I was 37 when I had the surgery, after 10 years of TN.
My MRI did not show anything, it is meant to rule out other causes, especially if you are under the "typical" age of onset, 50/60 years old. I had one doc specifically tell me I didn't have it just due to my age.

My doc found 3 compressions when he went it. I have very little pain, very sporadic now, usually due to stress. No meds for over a year. My recovery was slow, about 6 months. However, totally worth it.

I hope that you will have a speedy recovery. Take it easy, as Nancy said this is a major surgery, and it really throws your entire body for a loop. Expect to feel exhausted, maybe nauseous for awhile, and dizzy. Don't try to do too much too early. I did, and I would set myself back for another week just by doing a bit of housework.

A friend of mine (same age, 37) had her tonsils out, and the nurse told her it would be 6 months before she had her full energy back, and that is just for a tonsillectomy! (this friend by the way is a black belt, in fantastic shape).

Hope to hear from you soon, post as soon as you feel up to it to let us all know how you are doing.

Karen

[jenlw]

Hi Fraalan,
I'm Jen, I sometimes posted on here before the server went down, have only just found it works again! It's great you found us just in time, sorry I didn't post before your surgery. I haven't had an mvd i have had cryotherapy, but i agree with everyone in saying that the worrying and nervousness beforehand is actually worse than the surgery!
I hope it went well for you and that you get some relief, nobody deserves to be in this much pain! Although the doctors say that there is a certain age where you usually get tn that is not always the case. There are a few examples of us on here. I'm 19 and have had tn for 12 months. Some in their early 30's have it, even Rae who is only 4! We undersatnd what you're going through so don't hesitate to email or pm to talk! :)
Take care and don't do too much too soon!
Jen